Perception of burden of a group of caregivers of adolescents with cerebral palsy

Authors

DOI: https://doi.org/10.6018/eglobal.520121
Keywords: Burden perception, Cerebral palsy, Teenagers, Caregivers

Abstract

Introduction: Cerebral palsy is an irreversible neurological condition. It is described as a group of posture and movement disorders caused by injury to the immature brain; it is not progressive and may be associated with perceptual, sensory, communication, or behavioral problems. The experience of care creates significant changes both in family life and in the social structures in which they live together.
Objective: The objective of this study was to know the perception of burden in caregivers of severely compromised adolescents with cerebral palsy, spastic in their greater proportion, based on sociodemographic and clinical aspects.
Materials and methods: Cross-sectional quantitative study. Two questionnaires with sociodemographic and clinical information were applied in which the Gross Motor Function Classification was used to 60 adolescents with cerebral palsy and the Zarit Burden Scale to their caregivers.
Results: 55% of the patients were male. The mean age was 16 years, 70% were quadriparetic and 75% spastic. 48% of caregivers perceived intense overload. It was also found that the socioeconomic status has a statistically significant negative relationship with the level of perceived burden (p=0.0262). 45% of caregivers perceive that due to the time they spend with their relative, they do not have enough time for themselves.
Conclusions: Caregivers perceive high dependency on the part of the patients and insufficient economic resources for care; Additionally, they report that their family situation or interpersonal relationships are not affected by the care.

Downloads

Download data is not yet available.

References

Büğüşan S, Kahraman A, Elbasan B, Mutlu A. Do adolescents with cerebral palsy agree with their caregivers on their participation and quality of life? Disabil Health J. 2018;11(2):287-292. https://doi.org/10.1016/j.dhjo.2017.10.009

Freitag VL, Milbrath VM, Corso da Motta M da G. Madre-cuidadora de niño/adolescente con parálisis cerebral: El cuidado de sí misma. Enfermería Glob. 2018;17(50):325-360. https://doi.org/10.6018/eglobal.17.2.265821

Vadivelan K, Sekar P, Sruthi S, Gopichandran V. Burden of caregivers of children with cerebral palsy: an intersectional analysis of gender, poverty, stigma, and public policy. BMC Public Health. 2020;20(1):645. https://doi.org/10.1186/s12889-020-08808-0

Organización Mundial de la Salud, Milbank Memorial Fund. Hacia Un Consenso Internacional Sobre Las Politicas de Atención de Salud a Largo Plazo En El Envejecimiento.; 2000. https://apps.who.int/iris/handle/10665/66542

Roth DL, Fredman L, Haley WE. Informal caregiving and its impact on health: a reappraisal from population-based studies. Gerontologist. 2015;55(2):309-319. https://doi.org/10.1093/geront/gnu177

Wijesinghe CJ, Cunningham N, Fonseka P, Hewage CG, Østbye T. Factors associated with caregiver burden among caregivers of children with cerebral palsy in Sri Lanka. Asia-Pacific J public Heal. 2015;27(1):85-95. https://doi.org/10.1177/1010539514548756

Romero Massa E, Bohórquez Moreno C, Castro Muñoz K. Calidad de vida y sobrecarga percibida por cuidadores familiares de pacientes con enfermedad renal crónica, Cartagena (Colombia). Arch Med. 2018;18(1):105-113. https://doi.org/10.30554/archmed.18.1.2520.2018

Fajardo Ramos E, Soto Morales AM, Henao Castaño ÁM. Sobrecarga del cuidador del adulto mayor en el barrio tierra firme de Ibague (Colombia). Salud Uninorte. 2019;35(2). https://doi.org/10.14482/sun.35.2.618.97

Reyes Rojas M, Flórez Enciso E, Coronel Brochero L, Cadena Wilches A. Sobrecarga, calidad de vida, bienestar en cuidadoras de niños con discapacidad en dos regiones de Colombia. Duazary. 2019;16(2):134-145. https://doi.org/10.21676/2389783X.2948

Amador Ahumada C, Puello Alcocer EC, Valencia Jimenez NN. Características psicoafectivas y sobrecarga de los cuidadores informales de pacientes oncológicos terminales en Montería, Colombia. Rev Cuba Salud Pública. 2020;46(1). http://scielo.sld.cu/scielo.php?script=sci_abstract&pid=S0864-34662020000100010&lng=es&nrm=iso

Palisano R, Rosenbaum P, Walter S, Russell D, Wood E, Galuppi B. Development and reliability of a system to classify gross motor function in children with cerebral palsy. Dev Med Child Neurol. 1997;39(4):214-223. https://doi.org/10.1111/j.1469-8749.1997.tb07414.x

Barreto-Osorio RV, Campos de Aldana MS, Carrillo-González GM, et al. Entrevista Percepción de Carga del Cuidado de Zarit: pruebas psicométricas para Colombia. Aquichan. 2015;15(3):368-380. https://doi.org/10.5294/aqui.2015.15.3.5

Kaneko K, Onozuka D, Shibuta H, Hagihara A. Impact of electronic medical records (EMRs) on hospital productivity in Japan. Int J Med Inform. 2018;118:36-43. https://doi.org/10.1016/j.ijmedinf.2018.07.008

Rankin E, Haut M, Keefover R, Franzen M. The establishment of clinical cutoffs in measuring caregiver burden in dementia. Gerontologist. 1994;34(6):828-832. https://doi.org/10.1093/geront/34.6.828

Gómez-Galindo AM, Peñas-Felizzola OL, Parra-Esquivel EI. Caracterización y condiciones de los cuidadores de personas con discapacidad severa en Bogotá. Rev Salud Publica. 2016;18(3):367-378. https://doi.org/10.15446/rsap.v18n3.53048

Raina P, O'Donnell M, Schwellnus H, Rosenbaum P, King G, Brehaut J, et al. Caregiving process and caregiver burden: conceptual models to guide research and practice. BMC Pediatr. 2004;4:1. https://doi.org/10.1186/1471-2431-4-1

Gérain P, Zech E. Informal Caregiver Burnout? Development of a Theoretical Framework to Understand the Impact of Caregiving. Front Psychol. 2019;10:1748. https://doi.org/10.3389/fpsyg.2019.01748

Rodríguez-Lombana L, Chaparro-Díaz L. Soporte social y sobrecarga en cuidadores: revisión integrativa. Rev Cuid. 2020;11(1):e885. https://doi.org/10.15649/cuidarte.885

Campos de Aldana M, Durán Niño E, Rivera Carvajal R, Páez Esteban N, Carrillo Gozález G. Sobrecarga y apoyos en el cuidador familiar de pacientes con enfermedad crónica. Rev Cuid. 2019;10(3):e649. https://doi.org/10.15649/cuidarte.v10i3.649

Prakash V, Patel AM, Hariohm K, Palisano RJ. Higher Levels of Caregiver Strain Perceived by Indian Mothers of Children and Young Adults with Cerebral Palsy Who have Limited Self-Mobility. Phys Occup Ther Pediatr. 2017;37(1):64-73. https://doi.org/10.3109/01942638.2015.1138016

Pinquart M. Featured Article: Depressive Symptoms in Parents of Children With Chronic Health Conditions: A Meta-Analysis. J Pediatr Psychol. 2019;44(2):139-149. https://doi.org/10.1093/jpepsy/jsy075

Weber P, Bolli P, Heimgartner N, Merlo P, Zehnder T, Kätterer C. Behavioral and emotional problems in children and adults with cerebral palsy. Eur J Paediatr Neurol EJPN Off J Eur Paediatr Neurol Soc. 2016;20(2):270-274. https://doi.org/10.1016/j.ejpn.2015.12.003

Oliveira Barros AL, Mancia de Gutierrez G, Oliveira Barros A, Rodrigues Santos MTB. Quality of life and burden of caregivers of children and adolescents with disabilities. Spec Care Dentist. 2019;39(4):380-388. https://doi.org/10.1111/scd.12400

Burkhard A. A different life: caring for an adolescent or young adult with severe cerebral palsy. J Pediatr Nurs. 2013;28(4):357-363. https://doi.org/10.1016/j.pedn.2013.01.001

Guyard A, Michelsen SI, Arnaud C, Fauconnier J. Family adaptation to cerebral palsy in adolescents: A European multicenter study. Res Dev Disabil. 2017;61:138-150. https://doi.org/10.1016/j.ridd.2016.11.010

Lee CE, Burke MM, Arnold CK, Owen A. Comparing differences in support needs as perceived by parents of adult offspring with down syndrome, autism spectrum disorder and cerebral palsy. J Appl Res Intellect Disabil. 2019;32(1):194-205. https://doi.org/10.1111/jar.12521

Chou K. Caregiver burden: a concept analysis. J Pediatr Nurs. 2000;15(6):398-407. https://doi.org/10.1053/jpdn.2000.16709

Ortiz YG, Clavijo Lindarte AA, Angely SJM, Angarita Vega OM. Características sociodemográficas asociadas a la sobrecarga de los cuidadores de pacientes diabéticos en Cúcuta. Rev Cuid. 2013;4(1):459-466. http://www.scielo.org.co/pdf/cuid/v4n1/v4n1a05.pdf

Sawyer MG, Bittman M, LA Greca AM, Crettenden AD, Borojevic N, Raghavendra P, et al. Time demands of caring for children with cerebral palsy: what are the implications for maternal mental health? Dev Med Child Neurol. 2011;53(4):338-343. https://doi.org/10.1111/j.1469-8749.2010.03848.x

Departamento Administrativo Nacional de Estadística -DANE-. Comunicado de Prensa, Pobreza Monetaria Año 2018.; 2019. http://www.dane.gov.co/files/investigaciones/condiciones_vida/pobreza/2018/cp_pobreza_monetaria_18.pdf

Published
01-10-2022
How to Cite
[1]
Bolaños-Roldán, A.M. 2022. Perception of burden of a group of caregivers of adolescents with cerebral palsy. Global Nursing. 21, 4 (Oct. 2022), 460–483. DOI:https://doi.org/10.6018/eglobal.520121.
Issue
Section
ORIGINAL RESEARCH